Policies

Background

Tuberous Sclerosis Australia’s vision is a world where every family affected by Tuberous Sclerosis (TSC) is empowered by the best treatment, information and support.

Pharmaceutical companies are one key party in the search for better treatments, and eventually a cure, for TSC. Working with pharmaceutical companies that manufacture and market drugs and treatments gives us important background knowledge and provide positive networking opportunities.

Pharmaceutical companies are also willing to sponsor and fund certain activities we undertake. TSA, as a charitable organisation, relies on the generosity of its members and donors and on fundraising events to fund our activities. TSA also seeks grants from commercial organisations, government and philanthropic funds. We are committed to developing a variety of long term dependable income sources to fund our work.

However, pharmaceutical companies are not charitable organisations and have different interests from our own, including a direct commercial interest in TSC. We also acknowledge that in many cases, the partnership is not equal, in that the pharmaceutical company has many more resources at its disposal than TSA. For these reasons, we take particular care in how our organisation works with pharmaceutical companies and other for-profit health care providers.

We also acknowledge that, because there are a limited number of treatments for TSC, there are a limited number of pharmaceutical companies with an interest in TSC. TSA is also committed to supporting research that leads to new treatments for TSC.

The purpose of our policy is to provide clear principles and guidance about how TSA works with pharmaceutical companies to achieve our objectives, without compromising our integrity and our ability to support our members. These will ensure that our activities are not in any way influenced by the commercial interests of the for-profit companies we work with.

Policy Review

The TSA Committee will review this policy annually

Principles

TSA will independently set its own priorities, policies and plans

TSA is committed to total transparency in all dealings with pharmaceutical companies

TSA will not endorse individual pharmaceutical products or suppliers of health care services

TSA will seek to develop relationships with multiple pharmaceutical companies, so as not to develop a special relationship with only one company

TSA will engage in dialogue with pharmaceutical companies about Tuberous Sclerosis treatments for the betterment of our members.

Practice

1. Openness and Transparency:

a. This policy will be published on the TSA website.

b. A full list of donations and grants received from pharmaceutical companies will be published in the annual reports of TSA.

c. TSA will acknowledge financial support for projects with a statement similar to “This project was funded by an unrestricted grant from <company name>. This company had no influence over the outcomes of this project”.

d. TSA will maintain a register of all involvement with pharmaceutical companies which will be available on request the TSA members and the community.

e. The TSA Committee will encourage members to raise any concerns about TSA relationship with pharmaceutical companies. These questions and concerns will be discussed at the next committee meeting.

2. Funding of Projects

a. All relationships with pharmaceutical companies will be documented in signed memoranda of understanding (MOU). This MOU will have agreed roles and responsibilities clearly defined for all parties.

b. TSA will only encourage funding for projects that have been identified as priorities in the regular TSA planning process. These will be projects that align with TSA’s mission and objectives. Projects that are initiated by a pharmaceutical company will be approved by the TSA Committee before they proceed.

c. Funding will only be accepted from Pharmaceutical companies where the project has a fixed timeframe and outcome. Funding will not be accepted for ongoing costs of operating TSA.

d. TSA will attempt to fund projects by other sources first and only accept money from pharmaceutical companies where other funding requests are unsuccessful or unlikely to be successful.

3. Promotion

a. TSA will not endorse any specific drug or treatment. Where possible, when discussing treatments, TSA will refer to a class of drugs (e.g. “mTOR inhibitors”) rather than a specific drug or brand name.

b. TSA will not accept or distribute promotional products provided by a pharmaceutical company and will not allow distribution of such products at TSA events.

4. Education

a. TSA will keep our key staff and volunteers informed on TSC research, the drug development process and the way the pharmaceutical industry operates.

b. TSA will work with other members of TSC International and learn from their experiences of working with pharmaceutical companies.

c. TSA will seek ensure that all medical information it publishes are reviewed by the TSA medical advisors, who are independent clinicians.

5. Representing TSC Families

a. TSA understands that in its role as representing the families affected by TSC in Australia and New Zealand that it may be asked to review patient information material to ensure that it has validity and understanding for its audience. TSA will not accept any fee for this service. TSA representatives may, however, be reimbursed for any out of pocket expenses associated with this activity.

6. Other

a. The TSA Committee will review any offer of hospitality, including travel and accommodation that is provided or funded by a pharmaceutical company.

b. The TSA logo and name cannot be used by any pharmaceutical company to promote a product.

The personal information we hold

We hold contact information for the members of Tuberous Sclerosis Australia (TSA), members of the TSC Professionals Network, people who contact our information and support services, people who attend TSA events and people who make a donation to TSA.

We hold financial information for people who make a donation to TSA.

We hold sensitive health information for members of TSA and people who contact our information and support services.

Why we collect personal information

We collect personal information to allow us to provide our services. This includes sending information by post and email, connecting people with TSC to health professionals and holding educational events.

We also collect personal information to support our fundraising. We contact previous donors and fundraisers to give them information about our organisation and the people we help and to ask for their ongoing support.

We collect financial information to allow us to process financial transactions including one-off and recurring donations, membership fees and event registration fees.

We collect sensitive health information to allow us to provide our information and support services and to tailor information and our services to the needs of our members and others who contact us.

What happens if you do not provide us with personal information

You may be able deal with us anonymously or using a pseudonym. We will advise you of whether this is an option when you contact us. We will provide information and support about TSC to you as best we can with as little personal information as you are willing to provide.

We require personal information for all TSA members. You will not be able to become a member of TSA without providing personal information.

We are able to receive anonymous donations. You will be able to make a donation to TSA without providing personal information.

Due to regulations, we require personal information about all individuals and organisations who fundraise for TSA. We will not be able to authorise a fundraiser without collecting personal information.

How we collect and hold this information

We may collect information by paper form, on our website, by telephone or email.

All personal and sensitive information is held in our online database, secured by passwords and encryption.

From time to time it may be held in printed or electronic files for us by our staff, volunteers and suppliers. These are destroyed when they are no longer required to carry out our work.

Financial information is destroyed when the related financial transactions have been processed.

When we share this information

The information is used by TSA staff and volunteers. Our volunteers include the TSA committee, regional contacts and others that help us with our work.

We share personal information about members of the TSC Professionals Network with people with TSC seeking a health professional in their area.

We share contact information with our suppliers. For example, our mailing list is provided to our printer when they send printed information (such as our magazine) in the post. If we share personal information with individuals or organisations outside Australia we will ensure these organisations offer very similar protections as the Australian privacy regulations.

We share financial information only for the purposes of processing financial transactions.

We never share individual sensitive health information. We may use this information to provide aggregated, de-identified information for research and advocacy purposes. For example, we may share the number of people living with TSC in a particular area or in a particular age range.

How we use photographs

TSA may hold and use photographs of you if:

You have attended a TSA organized event; or

You have submitted photos to use to tell part of your TSC story.

We will always seek permission to take photographs of you. You can revoke this permission at any time. If you revoke permission we will take reasonable steps to remove this content from any online publications and exclude this content from all future printed and online publications.

How you can access your information and seek correction

You can request a copy of your information at any time. Please contact: